A friend and I were talking about the end of LW's treatment. I explained that I was more nervous about being off-treatment than on. Once chemo ends, what's going to happen? She said, "oh, so you're just going to have to trust the universe."
Eh?
No, no. I explained that I don't trust the universe. I mean, it's not any kind of antagonism, it's just a neutral thing. How can I "trust the universe" when I have so many friends who are in excruciating pain because their child has died? Um, sorry, but trust in one hand, spit in the other, see which fills up faster ...
It's the same as those with great faith in a sentient God who say, "Trust in God," "Trust in Jesus," etc. I just cock my head at that ... I don't understand. Many children die every day. God doesn't keep that from happening.
I'm sure they'd say something then like, "If that happens, it's because God (or the universe) has a plan."
And at that point, I try not to roll my eyes.
I don't trust in the universe; I don't really understand the concept. Along with "everything happens for a reason," and "cancer parents are special," that idea left me the day we were told, "Your daughter has a tumor." The first time.
Glad for those who draw comfort from the idea that it does, but for me, um, no. Especially not today, when I find out that in another one of our Wilms' families, a family whose child really has been a miracle -- and I don't say that generically, this is a child who was not expected to make it through one night and he survived that, but is still fighting cancer -- in this family, a family of tremendous faith, Mom just was diagnosed with her own, very serious, cancer.
I have another friend whose child is fighting cancer at the same time my friend's father is fighting cancer. Talk about the sandwich generation.
So, no, when LW goes off chemo, I won't just calmly trust the universe.
I will do as I did last time ... try to live fully between the scans that will come every three months. If I'm lucky, and capable, I'll do okay for most of the time, just losing my mind during the week before each scan.
And if I'm very lucky, that scan will show that I get to do the same for 3 more months. Until the next scan.
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Those are all troubling phrases for the reasons you say. How about "trust yourself." Trust that you will, as you have, meet what's next with the love, humor, pain and anger that is called for in order for you to keep going (especially if "keep going" also means lie in a heap of exhausted tears). Ah, listen to me. Giving the same thing that others gave you, just different words.
I've been listening to Harry Potter again and was really struck by a phrase and I can't even remember about whom it was said, but it was something along the lines of "he had the look of a child who has been loved and cared for." Please help me figure out why that phrase comes to me as I read these words you've written? I think it has to do with just knowing, not that God has a plan or even that you do, but that, in the end, you've loved as much as you thought possible--and perhaps even a bit more.
Whatever is next, you have that and that will push you through to whatever comes after that.
may you continue to stew in that precious commodity, which is forever abundant and for which there is no symbol on the DOW ticker board: love
I do not trust in the universe to save me, either, and my frustration at those who tell me to "have faith" in my cure sometimes get rudeness from me before I can stop myself. Easy for them to say, as they sit on the outside, observing.
I'm not special. I got cancer. It's not fair. It makes no sense to me, and I almost hope that it never does. Cancer is illogical and cruel, and I refuse to believe that it is part of some big plan.
Scan to scan is about right. Like you, I hope that I can live fully in those clear moments between scans. I hope that some days, even for a minute, I can forget. And I hope that the scans will keep granting me a reprieve.
I hope that you and LW get many, many, many years of reprieve.
I absolutely agree that there's little or no comfort to be found in the thought that everything we experience is part of some great plan. Frankly, if all of our joy/suffering/pain/happiness is part of a plan, whoever or whatever is in charge is a lousy planner.
But what I hear in "trust the universe" is "let go of the illusion of control." There's a lot of random crappiness that gets thrown our way (from the relatively insignificant to the gut-wrenching).
There are things we can do that are sensible, wise, loving and prudent that may mitigate our suffering. But nothing is going to protect us from the meteor that eventually crashes through the roof.
If we at least let go of the illusion that we can prevent the meteor crash, then we are less susceptible to the suffering that is born of the thought that somehow we can shut down the random crap generator (or at least keep it from raining down on us.)
For me, trusting the universe means being willing to live with the unknown. And it's not something that is necessarily comforting or comfortable in any way, but it's the reality of our lives.
And somehow coming to terms with that reality does expand the potential for recognizing and more fully experiencing moments of joy.
It's hard to learn how to trust the Universe when both Reason and Experience clearly show us that the Universe isn't trustworthy. Can't be counted on to do what is right or fair, can't even be counted on to behave in a consistent manner, and especially can't be counted on to hold up its end of the bargain, no matter how many promises we may make to each other. If anything, I think maybe the Universe has something of a twisted and malevolent sense of humor about it. Its capacity for irony is certainly profound, and at times there is even a streak of cruelty and meanness in its face.
Yet we can learn to trust ourselves and one another, perhaps as that PART of the Universe which is become conscious of (and thus conscientious about) itself. Whatever Unseen Spirit out there warms our hearts with the passion for justice, or allows us to feel empathy and compassion and love for one another, and gives us life and gives our lives meaning...whatever that is, we need to learn to trust it, and hope for it, and feel grateful for it when we find it...because we all sure could use a whole helluva lot more of it.
I don't trust the universe, but I enjoyed reading your post and the comments.
Cancer World destroys trust in so many ways. I guess what I have learned in the last few months is that there is no finish line. The process is never really done. We have been done with treatment for almost two years but in no way are we DONE!. Finished is not a reality. It is always there. I am just now starting to make plans for activities more than a month away. In fact, I let myself order tickets of the olympics in February of 2010. I realized what a step that was after the fact.
You are in a very hard space. Lots of people are thinking about you and that you can trust.
Our culture is such that our language for wishing others well almost inevitably have religious connotations.
Hopefully this quotation from Comte-Sponville works better:
We are cut off from happiness by the very hope that impels us to pursue it; cut off from the present (which is all) by the future (which is nothing).
I substitute "unknowable" for "nothing", but he has something rather profound there. Rather than hypothetizing about meaning in a grander scheme (such rationalizations having given us our sado-masochistic conceptions of the divine), cherish what we still have here, right now, and live to the fullest.
Hope this finds your family well,
--
Michel, visiting through a link in the interdependent web
I think a phrase like "trust the universe" is fine to use when a girlfriend and I are talking about trying to find a date, or doing our own haircolor, or fretting over the dry turkey on Thanksgiving Day. It's one of those throwaway-nice phrases, isn't it? But to apply it to what you're going through just makes me go, "Whaa?" As you've intuited, it's kind of the New Age-non-theistic version of "everything happens for a reason," which might be existentially true but there's a time and place for existential musings and talking to a friend about her baby daughter's cancer ain't it.
In my experience, people say this when they're worried or frightened and want to keep a little distance about it. You, of course, don't have the luxury of keeping any distance from it.
"It's hard to learn how to trust the Universe when both Reason and Experience clearly show us that the Universe isn't trustworthy."
To say nothing of the Hubble Space Telescope. . .
OTOH Reason and Experience and the Hubble Space Telescope clearly tell us that the proverbial "violent Universe" can be trusted to hand human beings and other sentient beings a rather raw deal from time to time, as Jim and others have suggested here. I don't think your friend meant "trust the universe" in that rather less than uplifting sense however. Their "trust the universe" exhortation comes across as a form of "blind faith" here. If you are can place trust in anything after what you have been through place it in yourself and your family and friends, including your "Little Warrior" of course.
Well said. Leave all the crystalhead and religious grass-skirt rubbish behind. All it does is cause more pain that it tries to sugar o'er. There is only one way to deal with the terrible neutrality that is the universe: face it, and where possible face it as a united group.
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